FEAT DAILY NEWSLETTER Sacramento, California

"Healing Autism: No Finer a Cause on the Planet" ________________________________________________________________

CARE

* Lifelong Concerns for a Special Child

RESEARCH

* Molecular Genetics And Animal Models In Autistic Disorder

* What Autism Teaches Us About Face Processing

* Comparing Ways to Measure Autism

EDUCATION

* The Crushing Cost of Special Education

* Rally Details Update: Schafer to Speak

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THE POWER OF ONE! IDEA is coming to WASHINGTON, DC

April 21st

Speaking at the Rally

LENNY SCHAFER

Editor of the FEAT Daily Newsletter

and The Autism Network

"The Power of One and the Power of 20,000 Strong Daily"

Expanding the Newsletter Network

Towards the Care, Treatment and Cure

of Autism through Political Action

BUILDING ON TODAY'S SUCCESSES

for the I.D.E.A. and Beyond

Also Speakers from 15 different Organizations to attend.

See announcement below for details.

*******

Lifelong Concerns for a Special Child

A different fear of death

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When Susan Colacello says she is afraid of death, she doesn't mean it in the generic way that most people use the phrase. Her fear is very specific. She doesn't want to die because she worries what will become of her son, Kevin, who has Down syndrome.

"I'm in a group of mothers who have disabled kids, and we all share the same thing," said Mrs. Colacello, 42, who lives in West Windsor, N.J. "We're terrified of dying."

For the parents of disabled children, that is often the essence of retirement and estate planning. There are few idyllic thoughts of golf courses and warm weather, few pleasant musings about who should inherit the family antiques. Instead there is dread, an underlying knowledge that no matter how many arrangements have been made and how much money has been provided, no one will care for a child with Down syndrome or autism or cerebral palsy the way parents have.

That worrying starts early: Kevin is only 3. And it is difficult to escape. Betty Stone of Des Plaines, Ill., also has a son with Down syndrome, but he is 40, and she is 81.

"My main concern is the future," said Mrs. Stone, whose husband died six months ago. "That's the big concern for all parents, no matter how old your child is."

There was a time when few parents worried that their disabled children would outlive them. Early intervention and improved health care have changed that. The mean age at death for a person with mental retardation was 18.5 in the 1930's, but by 1993 it was 66.2, one study found.

As longevity was increasing, the notion of placing severely disabled people in large, impersonal institutions was being discredited. In a 1999 study, David Braddock, now at the Coleman Institute for Cognitive Disabilities at the University of Colorado, calculated that almost 480,000 developmentally disabled people were living with family caregivers age 60 or older, with another 1.4 million living with family members younger than 60.

All this has turned estate planning into a financial and emotional maze for parents with disabled children. The government, in its Kafkaesque way, is both godsend and hindrance, providing a safety net but setting out an exacting procedure for any parent who wants to do more than that.

Federal and state programs pay for the basic care of a disabled adult; parents need not fear that their child will end up in the street. But the government generally does not pay for enhancements that parents view as crucial for their children — special camps, visits with relatives, private health insurance, therapeutic recreation like horseback riding and hundreds of other things. And, of course, many parents do not want to leave their disabled child at the mercy of the government, with its ever- changing cast of administrators and fickle budgets.

Yet if the disabled person has more than $2,000 in assets, the government claims them to cover its own costs, so leaving money to a disabled child in a traditional will does nothing. The government, though, has created a way around the $2,000 hurdle: parents can establish what is called a special-needs trust, using life insurance, real estate and other assets to create a fund that can pay for an enhanced life while leaving basic benefits like Supplemental Security Income intact.

Such is the planning gantlet parents of disabled children must run. That's the easy part. Going through the financial planning process, parents say, forces them to confront difficult, draining questions, like: What, exactly, are our child's long- term prospects? Who might be willing to act as guardian? Should we expect our nondisabled children to care for their sibling? What about our own hopes for retirement?

Like many parents, Susan and Albert Colacello put off facing those issues. Kevin makes procrastination easy; he is high-functioning for a child with Down syndrome, active and mischievous.

"You sometimes forget," Mr. Colacello, 40, said the other day, watching the boy wreak havoc in the living room like any other toddler. "And then the reality sets in: someone's going to have to take care of him."

An insistent aunt finally nudged the Colacellos toward a lawyer's office. So did the attacks of Sept. 11.

"We lost a really good friend," Mrs. Colacello said, "and he had his affairs really in order. It made things so much easier for his family." Last month the Colacellos signed documents creating a special- needs trust and establishing guardianship. They achieved a measure of security but lost some dreams. "This is a very necessary thing, but the reality of doing it really shatters your hopes," Mrs. Colacello said. "It's just a constant reminder that Kevin is never going to be able to make decisions."

And, she said, it is often jarringly at odds with the upbeat message that veterans in the world of disabilities use to ease the way for newcomers.

"On the one hand," Mrs. Colacello said, "we're supposed to feel that Kevin didn't change our lives. We're supposed to be positive. But Kevin can't even own anything."

The Colacellos know that the plans they have created will need to be revisited as Kevin ages. One delicate point will be what role his older brother, Christopher, now just 7, will play.

Rosalind and Joe Vargo of Syracuse, at 48, are just a few years older than the Colacellos, but they already have two decades' worth of experience dealing with such issues. Their daughter, also named Rosalind — Ro — is 21 and has Rett syndrome, a little-known neurological disorder that leaves its victims unable to talk and impairs cognition, mobility and muscle control.

Mrs. Vargo has a vivid memory from 20 years ago, when her daughter's disabilities were becoming evident, and a neighbor asked, "When are you going to send her away?" Though that is exactly what many parents were doing then, it was an image Mrs. Vargo could not bear.

"I was having nightmares that Ro would someday die alone in one of those developmental centers," she said. "That's not what we had dreamed, and that's not what we envision, now or when we're gone."

Like the Colacellos, the Vargos put plans in place early, naming a guardian and establishing a trust. "We weren't sure what that meant," Mr. Vargo recalled, "but we did it because we wanted to have something on paper. I don't think we looked at that will again for 10 years."

Eventually, though, they realized that the guardian they had named — Mrs. Vargo's father — was suddenly 75. It's a common problem for parents of older disabled children. Those most likely to serve as guardians are grandparents, aunts or uncles — people who are as old as or older than the parents they would replace.

As Ro reached adulthood, the Vargos were also confronted with their own limitations. A disabled child is served by the public-school system; special education, whatever its quality, at least gives the parents a daily respite. For the parents of a disabled adult who lives at home, however, relief is no longer automatic.

"Suddenly, the little yellow bus wasn't coming anymore," Mrs. Vargo said. "Ro was getting older, and we were getting older. Finally we looked at ourselves and said, `My God, we're going to be 50; we can't do this any longer,' and we began to ask for help."

The Vargos formed what is called a circle of support: a group of family members, friends and professionals who agreed to take collective responsibility for Ro's care. The couple sent out 30 letters to people who they thought might be willing; about a dozen responded.

Particularly gratifying to the Vargos is that Ro's two younger siblings, Josie, 19, and Mary, 16, have become active participants, often running the circle's meetings. The Vargos envision Josie taking over guardianship eventually. And they see themselves in a diminishing role, so that, when they die, Ro will still have a group of people looking out for her welfare. Withdrawing, though, is not easy.

"It's letting go of the decision- making," Mrs. Vargo said. "It's planning without you being the person in charge. I don't think it's an easy journey."

When parents with disabled children peer into the long-term future, they do not often see a leisurely retirement. They may stop working. They may even shift a child's care to a sibling or an institution. But unless they are very well off, they can't see burning resources that could be left for their child's trust fund.

The limitations can be geographic as well. Barbara Grant of Old Bridge, N.J., is only 40 but can see that having two sons with autism will affect her retirement. She emigrated from Jamaica in 1990 when she married a Jamaican who was already in the United States. When it became clear that her boys, now 10 and 8, would have lifelong needs best met in the United States, many retirement dreams evaporated.

"Prior to the autism diagnosis, I saw myself going back to Jamaica, but now that's out of the question," Ms. Grant said. "I will never be able to say, `Oh, now the kids have left home; I can feel free to gallivant.' "

Betty Stone, the 81-year-old in Illinois whose son, Craig, has Down syndrome, has not done much gallivanting in her golden years. When she and her husband, Dale, decided long ago not to institutionalize their only child, the ramifications stretched all the way to retirement. Her husband, an accountant, provided a decent nest egg, but with Craig living at home, there was no thought of years full of travel.

"Dale used to say that all the time, `Don't forget, we're not like other people,' " Mrs. Stone recalled. "We didn't take a vacation after 1990."

Mr. Stone died last summer, and now Mrs. Stone often feels overwhelmed by the demands of caring for Craig. She likened her role to that of a mother with teenagers. She is always, it seems, driving Craig somewhere — to his day program, to a medical appointment. Although she has a 45-year-old friend lined up to take over guardianship some day, she herself wants to make it to 95, just so she can keep an eye on things.

She hopes to leave her condominium to an organization that would provide live-in care for Craig in exchange for the deed, but the instability she has seen in such groups over the years leaves her nervous. Peace of mind remains elusive, she said, even though her husband provided for her and her son financially.

"I'm not hurting that way," she said. "I'm just hurting emotionally. And I'm tired." Copyright 2002 The New York Times Company

_______________________________________________________

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* * *

Molecular Genetics And Animal Models In Autistic Disorder

ds=11827743&dopt=Abstract <- - address ends here.

Andres C.INSERM U316, Tours Cedex, France

Autistic disorder is a behavioural syndrome beginning before the age of 3 years and lasting over the whole lifetime. It is characterised by impaired communication, impaired social interactions, and repetitive interests and behaviour.

The prevalence is about 7/10,000 taking a restrictive definition and more than 1/500 with a broader definition, including all the pervasive developmental disorders. The importance of genetic factors has been highlighted by epidemiological studies showing that autistic disorder is one of the most genetic neuropsychiatric diseases. The relative risk of first relatives is about 100-fold higher than the risk in the normal population and the concordance in monozygotic twin is about 60%.

Different strategies have been applied on the track of susceptibility genes. The systematic search of linked loci led to contradictory results, in part due to the heterogeneity of the clinical definitions, to the differences in the DNA markers, and to the different methods of analysis used.

An oversimplification of the inferred model is probably also cause of our disappointment. More work is necessary to give a clearer picture. One region emerges more frequently: the long arm of chromosome 7. Several candidate genes have been studied and some gave indications of association: the Reelin gene and the Wnt2 gene. Cytogenetical abnormalities are frequent at 15q11-13, the region of the Angelman and Prader-Willi syndrome. Imprinting plays an important role in this region, no candidate gene has been identified in autism.

Biochemical abnormalities have been found in the serotonin system. Association and linkage studies gave no consistent results with some serotonin receptors and in the transporter, although it seems interesting to go further in the biochemical characterisation of the serotonin transporter activity, particularly in platelets, easily accessible.

Two monogenic diseases have been associated with autistic disorder: tuberous sclerosis and fragile X. A better knowledge of the pathophysiology of these disorders can help to understand autism. Different other candidate genes have been tested, positive results await replications in other samples.

Animal models have been developed, generally by knocking out the different candidate genes. Behaviour studies have mainly focused on anxiety and learning paradigms. Another group of models results from surgical or toxic lesions of candidate regions in the brain, in general during development.

The tools to analyse these animals are not yet standardised, and an important effort needs to be undertaken.

PMID: 11827743 [PubMed - in process]

* * *

What Autism Teaches Us About Face Processing

Social interest and the development of cortical face specialization

ds=11891634&dopt=Abstract <- - address ends here.

Grelotti DJ, Gauthier I, Schultz RT. Child Study Center and Developmental Neuroimaging Program, Yale University, School of Medicine, New Haven, CT 06520-7900.

Investigations of face processing in persons with an autism spectrum disorder (ASD) inform upon theories of the development of "normal" face processing, and the story that emerges challenges some models of the nature and origin of cortical face specialization. Individuals with an ASD possess deficits in face processing and a lack of a fusiform face area (FFA).

Evidence from studies of ASD can be conceptualized best using an expertise framework of face processing rather than models that postulate a face module in the fusiform gyrus. Because persons with an ASD have reduced social interest, they may fail to develop cortical face specialization.

Face specialization may develop in normal individuals because they are socially motivated to regard the face, and such motivation promotes expertise for faces.

The amygdala is likely the key node in the system that marks objects as emotionally salient and could be crucial to the development of cortical face specialization.

Copyright 2002 Wiley Periodicals, Inc. Dev Psychobiol 40: 213-225, 2002. DOI 10.1002/dev.10028

PMID: 11891634 [PubMed - in process]

* * *

Comparing Ways to Measure Autism

'The relationship between 99mTc-HMPAO brain SPECT and the scores of real life rating scale in autistic children.'

ds=11891096&dopt=Abstract <- - address ends here.

Kaya M, Karasalihoglu S, Ustun F, Gultekin A, Cermik TF, Fazlioglu Y, Ture M, Yigitbasi ON, Berkarda S. Department of Nuclear Medicine, Faculty of Medicine, Trakya University, Tip Fakultesi, Nukleer Tip ABD 22030, Edirne, Turkey

Childhood autism is a developmental disability of unknown origin with probable multiple etiologies.

The purpose of this study was to compare the changes of regional cerebral blood flow (rCBF) in autistic and non-autistic controls, and to determine the relationship between rCBF on 99mTc-hexamethylpropylene amine oxime (HMPAO) brain SPECT and the scores of the Ritvo-Freeman Real Life Rating Scale (RLRS), IQ levels, and age of autistic children. Eighteen autistic children (four girls, 14 boys; mean age: 6.13plus minus1.99 years) and 11 non-autistic controls (five girls, six boys, mean age: 6.5plus minus3.39 years) were examined using 99mTc-HMPAO brain SPECT.

All the children satisfying DSM-IV criteria for autistic disorder were taken into evaluation, and scored by the Ritvo-Freeman RLRS. IQ levels of these children were determined by Goodenough IQ test. Six cortical regions of interest (ROIs; frontal (F), parietal (P), frontotemporal (FT), temporal (T), temporo-occipital (TO), and occipital (O)) were obtained on transaxial slices for count data acquisition.

The ratio of average counts in each ROI to whole-slice counts for the autistic children was correlated with the scores of Ritvo-Freeman RLRS. Hypoperfusion in rCBF in autistic children compared with the control group were identified in bilateral F, FT, T, and TO regions. We found no relationship between rCBF on 99mTc-HMPAO brain SPECT and the scores of the Ritvo-Freeman RLRS.

There was a relationship between bilateral F regions perfusion on 99mTc-HMPAO brain SPECT and the age of autistic children. There was also a negative correlation between IQ levels and the scores of sensory responses, social relationship to people, and sensory-motor responses. Our results suggest that 99mTc-HMPAO brain SPECT is helpful to locate the perfusion abnormalities but no correlation is found between rCBF on 99mTc-HMPAO brain SPECT and the scores of Ritvo-Freeman RLRS.

PMID: 11891096 [PubMed - in process]

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* * *

The Crushing Cost of Special Education

The growing backlash against the 'sacred-cow' disabled and how they're sucking the rest of us dry. If the latest set of school reforms fail, we'll know who to blame, won't we?]

Every year, Portland Public Schools spends more than a million dollars on taxis. The rides aren't for pampered administrators but for special-education students too vulnerable or too dangerous to ride buses.

Soaring transportation bills are among the many signs that special-ed costs are overwhelming Oregon school districts. Far more expensive are the customized instruction programs, designed to address disabilities almost too numerous and complicated to imagine.

For instance, many cab rides end at the Multnomah School on North Marine Drive, which serves some of Portland's most emotionally disturbed kids. "This is the school of last resort," says Principal Gay Bauman. "These kids have proven that they can't be anywhere else."

The former elementary school has been retrofitted to include stainless-steel-doored "time-out" cells with motion-sensitive locks, constant video monitoring and a security system that would be the envy of the county jail.

Staff members, trained in crisis intervention, are outfitted with metal whistles; one blast summons a squad of beefy reinforcements, including the security chief, a former pro football player.

Because of Multnomah's security measures and 3-to-1 student-staff ratio, educating its 49 students (47 of whom are boys) will cost the district more than $23,000 per student this year, nearly five times the per capita state funding Portland receives for regular education students.

Still, the more than $1 million spent on those 49 kids is a tiny fraction of Portland's special-ed budget, which, like others across the state, has rocketed ahead even as districts have cut spending on regular education.

Currently, the Portland district faces a $36 million budget deficit. To deal with this shortfall, the district is considering laying off hundreds of teachers and custodians, shortening what is already the nation's shortest school year, deferring textbook purchases and shutting down two elementary schools.

What the Portland school district cannot do, because of federal law, is cut even a penny from the $47 million it spent on special education last year. "Special ed has the first call on every dollar," says interim superintendent Jim Scherzinger. "Any service a kid needs short of a doctor, we have to provide. We don't have any choice."

Nobody is advocating denying special-ed recipients their rights, but spending more than $100,000 to educate a single special-ed student--as Portland does--while other students go without textbooks raises the uncomfortable question of whether school districts can be, as the law requires, all things to all people.

Many educators say special ed needs to be reined in. "'Sacred cow' is not the right term," says Portland Association of Teachers President Richard Garrett. "Special education is an untouchable cow."

Special education serves a broad spectrum of kids, from the straight-A student who can't pronounce the letter "r" to the student who can communicate only by moving his eyes.

To receive special ed, a student must undergo an evaluation by a team that includes a parent or guardian, a teacher and a battery of experts that can easily number in the double figures.

In all, there are 11 categories of disability that qualify kids for special ed, ranging from easily diagnosed problems such as vision and speech impairments to more complicated conditions such as learning disabilities, attention-deficit hyperactivity disorder and autism.

+Article continues at:

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THE POWER OF ONE! IDEA is coming to WASHINGTON, DC

with an event that is FREE and OPEN TO THE GENERAL PUBLIC.

April 21st

Speaking at the Rally

LENNY SCHAFER

Editor of the FEAT Daily Newsletter

and The Autism Network

" The Power of One and the Power of 20,000 Strong Daily "

Expanding the Newsletter Network

Towards the Care, Treatment and Cure

of Autism through Political Action

BUILDING ON TODAY'S SUCCESSES

for the I.D.E.A. and Beyond

Also Speakers from 15 different Organizations to attend. See below.

Unlocking Autism will be in Washington, DC again this year on April 21st hosting The Power of ONE! IDEA Rally on the Mall between 3rd and 4th streets. The rally is being cosponsored and underwritten this year by Cure Autism Now, The Autism Society of America, The New Jersey Center for Outreach & Services for the Autism Community, The Autism Coalition for Research and Education, The Vaccine Injury Alliance, Youth Consultation

Services: Sawtelle Learning Centers, SAFE Minds and Medical Interventions in Autism.

Last year, the theme of the rally was "The Power of ONE!" and the purpose was to remind everyone that they do personally possess the power to make a difference not only in the lives of their own children but in the lives of all families affected by autism.

This year, we have expanded on the power of one theme and incorporated

a primary focus on I. D. E. A. In 1975, Congress passed the Education of

the Handicapped Act which served as the precursor for the law known today as the Individuals with Disabilities Education Act. The purpose of the law was to ensure that individuals with disabilities had access to free and appropriate education in the least restrictive environment. The act set a goal for the Federal Government to provide states with 40% of their funding needed for special education programs.

Until 1997, with the reauthorization of IDEA, the funding hadn't even passed 8%. Since that time, disability groups have joined forces and have increased the funding last year to approximately 18% but we still have a long way to go to get the money through the Federal Government to make sure our children are receiving the services they deserve, and that the government said that they deserve all those years ago.

IDEA is important to everyone in every community whether they have a child with a disability or not. If the Federal Government doesn't provide the funding to the school systems, then states and counties are burdened with generating the funds to provide the services that they are required by federal law to provide, which in turn affects the funds available to all students in the public education system. It is in everyone's best interest to see IDEA fully funded.

IDEA is up for reauthorization during the 2002 Session. The leaders of the autism community this year thought it would be a good IDEA to discuss it in a public forum in Washington, DC at the rally this year!

We will kick off the rally with performances by the band Jonasay. Jonasay is a cutting edge quintet who spent much of 2001 touring with Hootie and the Blowfish. Their CD will be out in April and their clean smooth music packs a punch that everyone is sure to enjoy.

The Emcees of the event this year will once again be Jeana Smith with Unlocking Autism and Jeff Sell & Lee Grossman with the Autism Society of America. Speakers will include from over 15 Different Organizations will include: Shelley H. Reynolds - President, Unlocking Autism Nancy H. Cale - Vice President, Unlocking Autism Stephen Shore, Board Member, Unlocking Autism & Autism Society of America United States Congressman Mike Doyle - Pennsylvania - 18th District United States Congressman Chris Smith - New Jersey - 4th District Jonathan Shestack, President & Cofounder, Cure Autism Now Kevin Murray, Founder, Autism Coalition for Research & Education Cliff Shoemaker, J.D., Vaccine Injury Alliance Dr. Cathy Pratt, Ph.D., Director, Indiana Resource Center for Autism James Ball, Ed. D.,Vice President, Autism Services, Youth Consultation Service Sallie Bernard, Ph.D., SAFE Minds Barbara Loe Fisher, President & Cofounder, National Vaccine Information Center Andrew Baumann, New York Families of Autistic Children Victoria Beck Veronica Bird Jeff Bradstreet, M.D., FAAFP, International Child Resource Development Ctr. Bill Davis, UA Pennsylvania State Representative Ray Gallup, President, Autism Autoimmunity Project Miss Sherri Grippo - Miss Jefferson County 2002 - West Virginia Jennifer Lassiter, UA Virginia State Representative & President, N. Virginia ASA April Oakes, President & Founder, Casi's Quest Miss Brandi Peterson - Miss Omaha 2002 - Nebraska Lenny Schafer, Editor, FEAT Daily Newsletter

and The Autism Network

Laura Weinburg

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FEAT'S "Night of Caring" April 27

Sacramento FEAT is holding its' 9th Annual "Night of Caring" Dinner and Auction fundraiser on April 27, 2002. If you have been helped by the FEAT and the Daily Newsletter and would like to show your appreciation you can by supporting our fundraiser. Make an auction contribution or sponsorship donation. Please call 916-843-1536 for more information.

Thank you. FEAT is a tax-exempt non-profit corporation

_________________________________________________________________

Lenny Schafer, Editor@feat.org • CALENDAR EVENTS@feat.org Michelle Guppy Catherine Johnson PhD • Ron Sleith • Kay Stammers • Edward Decelie

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